A 29-year-old single mother from Eagleby, Queensland, has received a life-altering diagnosis of early onset Alzheimer’s disease. Erin Kelly’s diagnosis, confirmed in June 2024, marks a heartbreaking reality for her and her family, particularly as her mother, Robyne, also succumbed to the disease at the age of 50.
Kelly has long understood that Alzheimer’s could be part of her future, having witnessed its effects on her family. “The disease took my grandfather at 45, and my aunt when she was the same age,” she shared in an interview. “I just didn’t think it would come for me so soon.” Tests in May revealed that Kelly inherited a rare genetic mutation known as PSEN1, which significantly increases the risk of developing Alzheimer’s, particularly before the age of 65.
Impact of Early Onset Alzheimer’s Disease
The confirmation of her diagnosis came after medical scans indicated the first signs of neuronal damage, a precursor to the memory loss and cognitive decline associated with the disease. Kelly described her initial reaction as one of denial, a common response for individuals facing such shocking news. “I’ve started to notice small changes already,” she admitted. “Forgetting words and mixing words together.”
The challenges of early onset dementia are particularly acute, as this condition affects individuals under 65, making it rare. While the progression of Kelly’s disease is uncertain, it is expected to impact her memory, thinking, and behavior over time.
Despite the grim prognosis, Kelly remains determined to create lasting memories for her daughter, Evie, who is just eight years old. “We’re not exactly sure how or what to tell her yet,” Kelly explained. “She will get some information, but we want to protect her for as long as we can. The goal is to see her finish school and get married. I want to make sure she’s an adult before I die.”
Funding for Treatment and Community Support
In a bid to secure treatment that may slow the disease’s progression, Kelly’s stepsister, Jessica Simpson, has set up a Go Fund Me page to raise funds for a medication known as lecanemab (LEQEMBI). This treatment could potentially extend Kelly’s ability to function and continue her role as a mother. However, the Therapeutic Goods Administration (TGA) of Australia decided not to register the medication in October 2024, meaning that 18 months of treatment could cost Kelly as much as $90,000 AUD.
Simpson noted that even with a confirmed diagnosis, Kelly is too young to qualify for clinical trials in Australia. “This treatment could give her more time to keep working, keep functioning, and most importantly, keep being Evie’s mum for as long as she can,” she said.
According to Dementia Australia, dementia encompasses a range of symptoms arising from various illnesses that cause a progressive decline in cognitive function. Currently, approximately 433,000 Australians are living with dementia, with an estimated 29,000 individuals experiencing younger onset dementia, which can affect those in their 30s, 40s, and 50s.
As Kelly navigates this challenging journey, she highlights the importance of awareness regarding early onset Alzheimer’s. “Most people don’t associate Alzheimer’s with someone so young,” Simpson remarked. “But this is Erin’s reality. And sadly, it’s progressing fast.”
Kelly’s story serves as a poignant reminder of the personal impacts of Alzheimer’s disease and the vital need for support and understanding in the face of such a diagnosis.
